12/30

Julie was discharged yesterday from AMC up here, and we had an appt. with Dr. Saad at Froederdt right after; so we went right from the hospital to Milwaukee, and now back home. She had a staff infection which started somewhere in her port (which is the permanent line they put in her chest) and now we have to keep that port free and clear of infection which means we have to run IV’s of antibiotics; not abnormal for chemo. Her kidneys are doing great, things appear to be going as planned.So the plan is that in 3 weeks we go back to visit Froederdt, and Julie will be admitted for round 3 of Chemo, then they look at her counts etc.; if not where they need to be, one more round, but that would be it – 4 rounds is max. after that they need us to decide whether she goes in for the stem cell transplant right away, or take stem cells, freeze and wait; the preference is in that order; and of course we need to be approved by the board, but that’s a formality according to Doc. The stem cell transplant is a pretty intense procedure, and I’ll go into that later. For now, we maintain up here at the Center center, and wait 3 weeks to see what happens next. Happy New Year. Looking for a good one!

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12/26

Julie had to go in for a routine blood test this am at AMC (Appleton Med. Center), and they had to admit her again, because the white blood count was down, way down. Had a bit of a fever last night, but it went down this am, so I thought she’s make it till Tues., but she needed platelets, etc. So to be safe, they are keeping her for now; did a chest x-ray, etc.; her hemo/onc, Dr. Phillips up here in Appleton was on call, which was good, and he is there late tonight, so he will be keeping an eye on her. We made it through Christmas anyway, but today is our 22nd wedding anniversary – hoo-ray; I will be drinking the champagne alone tonight; I guess I’ll just have a Lienies and watch a movie with Clo. We’ll keep you posted.

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12/21 First Day of Winter; Brighter Days Ahead!

Julie was discharged from Froedert hospital today; happy to be clear of there for awhile; great place to get care, but I feel for the folks who have to spend the holidays in there… no fun.  I guess can’t say much about hospital food, but she was sure hungry when we got out! She went through a bag of swedish fish, twizzlers, mentos, then a double bacon cheeseburger, fries and a turtle sundae at Culvers! Apparently her appetite is back; guess I better read those diet restrictions, but I figure after 4 days of chemo, you can eat whatever you damn well want, tonight anyway! We will be hunkering down for the next week, and Julie will be getting her labs, some other meds here in the Fox Cities for a change again, which will be nice. We’ll have the girls all here for our first Christmas Eve/Day at our house as far as I can remember; we will miss everyone, but it will be nice to be together. It’s supposed to snow like mad, so we’ll have the fireplace going for a few days. All the presents are wrapped and under the tree. We’ll update in a few days. Merry Christmas everyone!

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11/17

Just got back from the hospital from seeing Julie today; she was re-admitted yesterday, and will receive chemo there for the next few days through the weekend, and probably, we’ll get her out of there Mon., Tues. The GOOD news is that her platelets were up, kidneys are more stable and therefore, the chemo is doing it’s job. Next step… after the Holidays, is to try to move ahead with the stem harvest, then down the road, they do the stem cell transplant. Thanks again to everyone for the support and love; we needed lot’s of help and got it; means more than you can know!

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12/9

We had our first appointment at Froedert since Julie was released; we met with Doctor Saad, who also saw her in the hospital; so basically, we got the low down on what’s happening  and what the program is moving forward. Julie’s labs came back pretty good considering, the swelling of the spleen, etc. has come down dramatically, and her platelet counts are much improved. So moving forward, Julie will be admitted next week Wed., and will do round 2 of the Chemo (round 3 depending on how you look at it, I guess); she will be admitted for approx. a week, and the idea is to be discharged before Christmas; then come back after New Year and at that point, they will harvest her stem cells I believe, and put them in the freezer. The next phase after that is to look at another more aggressive Chemo and after  checks out, go ahead with the autologous stem cell transplant, which is like “bone marrow dialysis”. The idea there is to use the last round of chemo to kill off the remaining myeloma, then do the transplant and hopefully move into remission. Most likely there would be some maintenance chemo in pill form after, but it’s too soon to speculate on that. There is no cure, but Doc explained that some people do well with this treatment and that’s the plan. There are other options, none of them very good or recommended. A lot of people have been wondering and asking the following questions (including me), so i’ll just bottom line it here:

1.) Myeloma is pretty rare to begin with; it’s even more odd that Julie has is given her age, sex and race; all opposite of what the trends would indicate; no reason why, it just is what it is. It’s an abnormality in her chromosomes; not inherited or passed on.

2.) Julie has probably had this for some time, and she is in an advanced “stage”; it is not however like conventional cancer, i.e. where they find it in tumor form etc., and in early phases it is not typically symptomatic, so almost everyone is in an advanced stage when they find it; it reaches a critical mass point, and things happen. They found it due to hospitalization when it was discovered she was anemic etc.

3.) If you look up the life expectancies with any cancers, they are typically pretty aggressive, and we are not paying any attention to any of that. Julie is younger at diagnosis which helps a lot and she is getting first class care at Froederdt, so from everything I know today, our assumption is that this treatment will be successful, and we can move on with remission at some point. Not curable, but Doc noted that people go on to live decades after this treatment.

So that’s what I know; I won’t be posting as much unless there is a significant update; we have a long road to go; it’s hard, very hard, but Julie is holding up and we are hopeful and looking to the future. A great big thank you out there to our friends, family, the healthcare profs and FujiFilm, my employer for the great health insurance and the understanding. I couldn’t ask for a better situation and support structure to help us out in these hard times. It will not be forgotten!

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12/2: Julie is Home!

Kind of a surprise; they called and said they were discharging her; things are looking more stable as far as white blood cell counts, platelets and kidney function, so they let her go! She will continue to get labwork up here, but will still be managed out of Froederdt which is great. We go back and meet with Dr. Saad on Tues. to see what the next steps might be.

She is resting; still a long road ahead! Thanks for all the support!

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